making it up as I go along…literally

Immunoglobulins

I thought I’d better brush aside some of the tumbleweed blowing through this place, after only posting once in the entire month of April. In my defence I’ve been very busy, but I look set to get even busier in the coming weeks so I thought I’d better at least say hello and give a brief update for anyone who’s interested, before disappearing again for a few weeks!

This time last year I was on the verge of some big changes, and had some major decisions to make, so on the 30th April, aka Beltane, I lit some candles, got myself a cold beer and sat cross legged on my bed and dug deep to figure out what it was I wanted and needed to do in the coming months. Looking back now, I can see how important those decisions were, and appreciate how brutally honest I was with myself that evening.

So again last night I did the same thing, (except, switch beer for wine, and add some dubious-smelling incense into the mix), and this morning I’m feeling good about the challenges that lie ahead.

This summer I’ll be starting a new job (probably within the next couple of weeks), starting therapy (this Wednesday) and starting a brand-new writing project The job is back at my old hospital, although in a very different role, the therapy is high-intensity CBT, and the writing project is a young-adult fairytale with a twist. All of which I’m pretty excited about (well, I don’t know that I’d say ‘excited’ for the therapy actually, but…’positive’, maybe?!)

Between those three things I’m not sure how I’m going to have time for much else to be honest, but I will try to share as much as I can about my experiences, in case it helps anyone else.

I’m still posting my YA contemporary over on Wattpad, and I have a loyal fan base of about ten readers (most of whom are friends/family) who are consistently reading every chapter update and telling me they’re enjoying it, which I think is all most of us really want when we share our work, so I’m calling it a success so far. I’ve also been pushing myself outside my comfort zone in other ways, like entering writing contests, submitting short stories for anthologies, and taking up burlesque dancing!

My CIDP continues to be well-managed and I’m hoping to reduce my dose of immunoglobulins over the summer months, and my PCOS is also behaving, so for once I don’t feel like I’m using up half my energy in a battle of wills with my own body.

Generally, aside from crippling anxiety, (which the therapy will hopefully help with), and a distinct lack of money (which the job should surely help with), life is good. (Although obviously I hate typing that for fear of jinxing myself in some way, damn anxiety.)

A year ago today, I was admitted to hospital. I had been trying, and failing to ignore the fact that there was something seriously wrong with me, but finally my body decided to force my hand so to speak, and I lost the use of the lower half of my left leg quite suddenly.

I cried when I was admitted, partly because I’d been awake for about 36 hours, and partly because I was terrified. I knew I didn’t have a trapped nerve in my back, but that was what I’d been hoping the Drs examining me would say: “Oh, this is just a trapped nerve, we can just ping that back there and, off you go…good as new!” I’m not stupid, but you’d be surprised at how powerful denial can be. I’d been experiencing neurological symptoms, like phantom sensations, and twitching and tremors for over 4 months by this point, so on some level I knew I was going to be admitted and my symptoms investigated, I just really really didn’t want it to be true.

The answers didn’t come quickly. I blogged about that first hospital experience here and here and here. I did eventually leave a week later with a diagnosis of Guillain-Barre Syndrome, but within weeks I was back in hospital. I wrote about my experiences during that stay in a series of blog posts: The Fall, The Plan, The Shocks, The Stairs, and The Blow, as well as Funny Hospital Moments.

Of course later my diagnosis was changed to one of CIDP. Almost exactly the same thing, but instead of being an acute (one-off) episode, it meant I was stuck with it forever.

12 whole months have passed since that first night on the acute medical ward at Manchester Royal Infirmary so I thought it might be a good time to talk about how CIDP has changed my life (or not, as the case may be).

Life with CIDP

I have symptoms every day. I usually wake up with nerve pain in some part of my body, most often my arms or legs along with a kind of aching and stiffness in my legs, as though I’ve done a really long walk the day before (usually I haven’t, but if I have, then the feeling is about a million x worse, obviously!) During the day I manage to do pretty much all the same stuff I’ve always done, it’s just that some stuff is harder, or takes more effort than it used to. Fastening buttons and shoe laces is a bit of a nightmare as fine motor stuff (especially if it’s repetitive) causes tremors in my hands, along with a pins and needles type sensation in my hands and fingers. I’ve come to terms with the fact that I’m never going to be a knitter 😉

I also get random short-sharp pains, which can occur in any part of my body at any time. They only ever last a couple of seconds absolute maximum, but sometimes come in clusters. This is where the damage to my nerves is preventing electrical signals from passing through, and the sensation genuinely is a lot like being given a small electric shock out of the blue. They’re often in my arms and legs but I also get them in my body. I also get muscle spasms and twitching, (the technical term being myoclonic jerks, or seizures). These are one of my more visible symptoms, you can see the muscles in the tops of my arms or in my calves visibly twitching, and I have particularly bad nerve damage in my feet, so that my 2nd to big toe can often be seen twitching away to itself. Psychologically this is one of the harder things to live with, which may sound ridiculous but I challenge you to fall asleep, no matter how bloody exhausted you are (and I often am) when one of your toes thinks it’s performing in River Dance. Go on, try it, and I dare you to tell me it isn’t the most infuriating thing you’ve ever experienced in your life!

Another daily feature is fatigue. If you haven’t heard of Spoon Theory, then please go read about it right now, not only will it save me explaining the energy involved in normal day-to-day activities with CIDP but it gives an insight into what it is like for everyone with almost every chronic health condition I can think of.

For the most part those are the only difficulties I have in terms of daily life. Providing I have had my IV Immunoglobulins within the last 21 days or so. I have them every 28 days, so you can see that there is a gap, where the effects of the IVIG are wearing off, but I don’t get topped up right away. It used to be the case that the final week before my next treatment was pretty much a write-off, but it’s improved quite a bit in the last few months and I only really notice myself deteriorating in the final 4 or 5 days before my next appointment. That’s when the biggest component of CIDP, muscle weakness presents itself, and when in the past I would have to resort to using a crutch to walk. Thankfully I’ve improved, and haven’t needed to use my crutch since February, which is amazing, but I do still struggle. The stairs are one of the biggest challenges. I can still manage them, they’re just tricky, and I become unable to carry anything up or down them as I need my hands free to use the banister/wall to help myself up or guide myself down. I can’t lift the kids, or anything else heavy or bulky. I can’t open bottles, packets or cans. I struggle to get up from sitting in a low chair, or from kneeling or squatting. I become ridiculously clumsy (yes, even more so than usual) and my tiredness levels reach ZOMBIE status.

Then 28 days after my last dose I go back to the hospital for another 80g of Privigen. The day after IVIG I’m usually pretty groggy and at my worst in terms of symptoms but then within 24 hours of my infusion finishing it kicks in and I’m back to my baseline.

I saw my consultant last month and he’s pleased with how things are going and offered me the chance to be considered for a clinical trial where I’d be able to self-administer my own IVIG subcutaneously at home on a weekly basis. There wouldn’t be much difference except for the freedom of being able to have my infusions at home, at a time that suited me, and it would remove the day I need to spend in hospital every month. Plus my veins are tricksy, so it would mean I could avoid having health professionals digging away at them trying to find a good one. (Subcutaneous administration is where a very fine needle is inserted under the skin, rather than into a vein). There is a loooong waiting list for the trial though, and strict criteria, so it’s not a guarantee, but then nothing is when you’re living with a long term medical condition, especially one so rare and not well understood.

In terms of things I can do to help myself, it’s really the things we should ALL be doing to give our bodies a fighting chance at dealing with anything that it’s battling. That is- to put more or less the right stuff in, and treat it with a bit of respect. So I’m talking good food, regular exercise, plenty of sleep and zero stress. You know, nothing too difficult to get right 😉 Other than that, I just need to be careful to avoid people with infections and viruses because of having a lowered immune system 75% of the time. So, again- not too tricky!

There is a chance I could go into remission spontaneously, it’s not unheard of but it’s not too common either. Most of the success for long term remission has come from the use of pulsed steroids over a long period of time, and my trial of pulsed dexamethasone over the christmas/new year period last year has convinced me that if several months of steroids are what it takes to go into remission, I’d rather live with CIDP. And I’m sorry if that sounds overly melodramatic, but it’s true.

Never have I felt so ill, so depressed, and so disabled as those weeks I spent scoffing steroids and feeling like I was turning into a stranger, both in body and mind. And it didn’t even work anyway. Although, arguably I didn’t give it a decent chance. But see above re: Worst Time Ever.

So, that’s really it, for me. That’s how life with CIDP looks for me at the minute. Lots of twitching and trembling, with a bit of nerve pain and muscle weakness thrown in for good measure.

Except of course, that isn’t it at all is it? The effects of CIDP aren’t just the physical symptoms I live with but the overall impact it’s had on my life. One year ago was the last shift I worked as a nurse. The night before my admission to hospital I was actually at work, terrified to call in sick because of my less-than-desirable sickness record, I’d gone in despite the fact that I couldn’t open medicine bottles, or tear open packs of IV fluids, or write my notes without my hands beginning to shake uncontrollably, or connect a syringe to an IV line without assistance. Basically I shouldn’t have been there, and when I drove home and realised I could barely push my foot down on the clutch, and needed 2 hands to change gears because the effort was too much for one, then and only then did I realise just how badly wrong things were and how lucky I was not to have had an accident or made a mistake as a result of it.

So, after being off long-term sick, I handed in my notice in June and I’m not planning to go back to nursing, for the foreseeable (or even distant, if we’re honest) future.

Would I have left nursing if I hadn’t acquired and been diagnosed with CIDP? Maybe…probably, at some point. But it definitely accelerated the decision considerably. I have almost finished writing my first book. Would I have done that without having CIDP? Yes, without a doubt. But again, the CIDP experience has definitely been like a jolt of electricity (pun very much intended) forcing me to put into action NOW things that I’ve been planning to do for ages. The same goes for my doula training, and looking into fostering too. And even silly stuff like getting my nose pierced, after wanting it done for about three trillion millenia (ok, since I was 12). I am so over “Maybe…tomorrow…” and totally into “NOW, NOW NOWWWWWW!” which isn’t always a good thing actually, just ask Chris who has to live with me and my impulsivity every day.

There are negative aspects to that too though, being aware of your own fragility and mortality isn’t always helpful. Because I ignored my body’s signals for so long last year, I am now over-alert, so a pimple is a life threatening rash, and a headache is surely a fatal tumour. It’s ironic really, that I managed months of “la la la” metaphorical sticking my fingers in my ears when there really was something very wrong, but now I over-react to every tiny thing.

I can’t decide if the experience of suddenly losing control of my own body and being diagnosed with CIDP has fundamentally changed me as a person OR if actually this is who I always was, and it has just been a catalyst for allowing my real self to come to the surface. Either way there’s no denying that the reach of CIDP has gone beyond “Oh, I sometimes have mobility issues and shaky hands” to something much much bigger, that is harder to explain.

Tonight I’m just glad to be where I am, at home with my boys, with a diagnosis and a management plan. My heart goes out to all those battling chronic illness without a clear idea of what it is they’re actually fighting, because for me, as much as people expected me to be upset when I was told I had CIDP, the relief of knowing what was happening to me stripped away so much of the fear and worry, it was almost a relief in some ways to just have a name for it and an idea of what might help.

I should be honest here and say that when I first became ill and googled my symptoms (don’t EVER do that, by the way! Trust me!) the first few hits were MS, MND/ALS, Parkinsons, and further down the page Guillain-Barre. One of the junior doctors who examined me during my second hospital admission suggested a brain tumour as a possibility (in a very positive way, I might add “Maybe you just have a brain tumour and we can get in there and cut it right out! Better that than GBS, I wouldn’t wish that on anybody!”. No, I am not making this shit up)

So I don’t want to celebrate not having those conditions, because how vulgar is that? Nor do I particularly want to celebrate what has happened over the last year BUT I do want to acknowledge it and this (incredibly long) blog post is my way of doing that…along with a teensy glass of rum and coke of course 😉

As I live blogged from the hospital yesterday, this month, for the first time, one of the Neuro Specialist Nurses decided I could attempt to have the full 80g of Privigen I would usually have over 2 days, over just one day instead.

I was excited but terrified at the prospect, as having experienced some of the negative side effects of treatment after my IVIG in November, I was not relishing the idea of spending 48 hours lying in the dark cuddling a vomit bowl. Thankfully, I tolerated the increased infusion rate really well. (And when I say increased infusion rate, I really mean it! Starting at 100mls/hr instead of 21mls/hr and finishing up at 300mls/hr rather than 150mls/hr!)

So rather than spending all day yesterday, and all day today at Salford Royal, hooked up to an IV, I was done by 3pm yesterday and didn’t need to go back at all today.

It was so strange coming home without my cannula, and not needing to get up and go anywhere first thing this morning. Strange but brilliant.

I had a bit of a lie-in, not getting out of bed until 10am! Then we had a cooked breakfast, which is a rare treat, playtime with the rabbits, and then this afternoon I got to break in my new shoes when we had a leisurely (leisurely being the operative word there) stroll to the park.

The boys took their bikes, with mixed success. Toby is getting pretty fast and daring on his, whereas Rudy is still a bit unsure, and after taking a tumble on the bike path he was all the more anxious for the rest of the trip, periodically screaming, and yelling “IT WOBBLING!”

By the time we made it to the playground the sun had really come out, and some lads playing football on the courts had some reggae playing and as I sat, with my ginormous hips wedged into a swing, which creaked rather ominously under my weight, and watched Chris and the boys running, spinning, climbing and swinging I felt so thankful for this unexpected free day.

The really great news is that in theory I will now be able to have my IVIG over just one day every time, so there will be many more ‘Free Days’ in the future, although since I know about them already I don’t think it will be quite the same as the feeling I had today…of relishing a day with my family that I didn’t know I would have.

It seems to be a universal law that as soon as you find yourself ‘comfortable’ with a situation, that situation will change.

When it comes to regular IVIG therapy, perhaps ‘comfortable’ is not the right choice of word but it’s fair to say that 4 months after being diagnosed with CIDP and 3 treatments in to my regular IVIG routine I felt like I had the situation all figured out in my head…

Chris requests the Monday and Tuesday off work.

I pack a little bag of stuffs to keep myself entertained.

I endure the horrors of rush hour traffic to arrive at Salford Royal for 9.30am.

I’m shown to a bed (which I never actually lie on).

I’m cannulated and I spend the day hooked up to an IV.

I have my arm bandaged up to protect my cannula.

I battle my way through rush hour again to get home in time for tea and to put the boys to bed.

And then it’s just a case of rinse and repeat the following day (but without needing to be cannulated obviously).

So of course when I turned up this morning, bright and breezy despite the pins and needles and tremors, with my bottle of water and library book…instead of being shown to “my bed” I was instead told to “take a seat in the waiting area”.

Well now, this is different, I thought, still smiling.

I was then told that there were no beds and I was one of several people waiting for one.

At this point, I must confess my smile was faltering as I tried to quell the rising panic. You see, something you may not know about me, is that I am a drug addict.

Yes indeedy. I’m all sweetness and light until I can’t get my ‘fix’ and then I’m all tears and tantrums (internal- I have yet to smash up an NHS waiting room. Frankly, by the time my IVIG is due, I don’t have the energy!)

Clearly I am physically dependent on the immunoglobulins. Not chemically, and I certainly don’t get withdrawal symptoms, but without it I’d be in a mess. In addition however, I have also become mentally dependent on it. The idea of life without it is so terrifying, that I can’t help but be. Knowing that my treatment is booked in and coming up is such a relief. It makes the final week of my month, when my symptoms increase and start interfering with my day-to-day life bearable, knowing that my boost, and ‘normality’ is just around the corner.

So there I was. Serene on the outside but on the verge of freaking out internally. I decided the best course of action was distraction, so I struck up a conversation with a fellow patient also waiting.

By coincidence, his story matched mine almost exactly…well…I say almost exactly. He had at least 25 years and about 100lbs on me, plus he’d had some heart surgery to boot. But his CIDP journey was very similar, initially having been diagnosed with GBS as I was.

We were still chatting when my name was called, only instead of being admitted to the ward I was shown to the Chair Bay.

You can probably guess what that is from it’s title. Yes, it’s a room full of chairs. I’d heard about this place but never seen it for myself.

Its actual title is “Infusion Bay” as it’s strictly for patients who are in for infusions (whereas the ward is a mixture of people needing infusions, biopsies, and a variety of neurological investigations) and it operates to a pretty tight schedule so in theory you sit down, get your IV infusion and then get out of there.

I am still a relative newbie to this whole business (not that I feel it, but today I sat next to a guy who has been coming here for treatment for over 3 years, so that gave me some perspective) and therefore my infusion rate has been pretty slow up to now, meaning I am not an ideal candidate for The Bay.

But since there was no bed for me I was MORE than happy to be a Chair Hog for a couple of days.

I was then visited by one of the neuro specialist nurses who was reviewing my treatment regime, and wanted to know why the hell (my words, not hers) my rate hadn’t increased beyond 150mls/hr when my maximum safe infusion rate is over twice that. The answer is partly due to individual nurses being over-cautious and partly due to staffing, as often a nurse will say “I’ll be back in half an hour to increase the rate” and I don’t see her until 2 hours later. It’s no biggie as far as I’m concerned. Regardless of how slow or fast it drips through I get the same amount and it has the same effect, so if I’m stuck in hospital all day for 2 days out of the month then so be it.

I must admit it would be nice to spend less time hooked up though and it was always my consultant’s plan that I eventually have the full 80g in one day. So when she suggested we give it a whirl today, since I’m in The Bay anyway, I thought “Why not?!”

So here I am. My second bottle of Privigen is currently being pumped into a vein in my right wrist at a rate of 200 mls/hr and I have 2 more lined up ready and waiting.

The side effects of an increased infusion rate can be high blood pressure, headaches and flu like symptoms, some of which can be combated by keeping well hydrated (hence me currently drinking water like it’s going out of fashion.)

It would be great if I could have the full 80g in one day but if I can’t, well then just knowing I will get it at all, is enough for the addict in me.

Some days I feel like I’m in my own twisted version of The Truman Show. You know, where everything you touch turns to shit and you can’t help but wonder if there’s some underlying conspiracy to drive you to the brink of insanity?

Today is not one of those days. Today is the opposite of one of those days.

First up, Chris went for his first ever driving lesson. That probably sounds like no big deal. Except that it’s a huge super massive deal.

When we discovered I was pregnant with Toby (on the 13th March 2009) I told him “You need to learn to drive before this baby is born!” and again when I found out I was pregnant with Rudy on the 12th February 2011, I said the same thing. Those embryos are now 4 and 2 years old respectively and until this morning Chris had yet to actually get behind the wheel!

After his lesson (which was apparently a great success, and certainly the Audi appeared intact on his return) I had to get bloods done as part of my molar pregnancy follow up. I figured it was going to be a huge pain in the arse as the specialist centre I’m under send all the specimen bottles and request forms etc direct to me and if there’s one thing us HCP’s hate, it’s patients’ who have more of a clue what’s going on than we do 😉 But in fact I got called through right on time, presented my blood bottle and paperwork and it was done and dusted within a couple of minutes. In fact, because I am driving again these days, the whole experience from leaving my house to walking back through the front door took exactly 20 minutes. There was even a parking space in the GP surgery car park! There is never a parking space in the GP surgery car park! (That was my first clue toward the reverse Truman show effect).

Then our lovely friends Emma and Ben came to collect the boys to take them on an exciting trip to the Sealife Centre and for a sleepover! Faced with the prospect of 24 hours child free in which to do whatever we pleased (so…that’ll be 24 hours of uninterrupted sleep then 😉 ) whilst our boys had a whale of a time (excuse the pun!) I really didn’t see how the day could get much better.

Then a letter from my consultant dropped through the letterbox.

It begins:

Well that got my attention. This guy could definitely write novels, he’s certainly got that “hook them from the first line then reel them in” quality.

He goes on to say that given how negatively I reacted to my recent trial of steroids he believes he is justified in allowing me 5-6 months of IVIG treatment before considering other options.

That means not starting prednisolone this week and waiting 2 months to see how I react to it. It means that for the first half of 2014 my CIDP will be managed and I will be able to lead some semblance of a ‘normal’ life and take a break from hospital admissions and trialling medications and their side effects. It is, in short, very good news. Which, as a family, we haven’t had much of recently.

So since today appears to be going so well, and since our children are safe and happy at Mermaid Cottage I think the only right and proper thing to do is to go out and celebrate…just as soon as I finish this blog post…and take a long hot bubble bath…and have a disco nap…

It’s been a while since my last post, and an even bigger while since the one before that. I don’t really know what I’m doing with this blog anymore, it started out as an attempt to maintain a slippery grasp on my sanity as I embarked upon parenting two children under the age of two, and here I am, with my boys both over the age of two now, finding myself writing about my life as it spirals out of my control thanks to a crazy thing called CIDP.

I realised yesterday that I haven’t ever really explained to some people what this condition I’ve been diagnosed with, and is quickly taking over my life, actually IS so I thought I’d give it a shot.

CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy. It’s an autoimmune condition, which means my body is doing this to itself. No one knows why but the most likely scenario is that at some point last year my body was exposed to a virus, and for reasons unknown, when my immune system came to attack that virus it became confused and started attacking itself instead. More specifically attacking the myelin sheath that covers and protects the nerves in my peripheral nervous system, which causes them to function incorrectly, or stop functioning altogether.

Now before I lose all but the medically trained of you, with all this talk of myelin sheaths and whatnot I’ll explain what that means in real terms.

It means that without any treatment I would likely be totally paralysed within the space of approximately 12 weeks. The closest I have come to that is when my symptoms first presented and were thought to be a mild version of the acute form (Guillan Barre Syndrome). Within 8 weeks of waking up with a dead leg, I could no longer get out of bed or go to the toilet independently, I couldn’t walk without the assistance of 2 people and I couldn’t lift my arms to a 90 degree angle, meaning that washing and dressing myself were pretty much out of the question also. Even very simple things like feeding myself or changing position in bed were difficult and exhausting.

There is no cure for CIDP, it won’t ever go away, but it can be ‘managed’, which is to say that there are treatment options- obviously, as here I sit, typing away with a cup of tea next to me that I walked to the kitchen and made all by myself. Unfortunately, none of the treatment options are straightforward, or guaranteed to work.

So far, there is one option that not only works for me but works fantastically well, enabling me to live an almost ‘normal’ life for 3-4 weeks at a time. That is Intravenous Human Immunoglobulin Infusion or IVIG.

So far I have had three courses of IVIG, in October, November and January and responded brilliantly each time. Yes it has meant being admitted to hospital for between 4 days to a week on each occasion and yes it is an invasive procedure that isn’t without risk but is it worth it to be able to walk out of the hospital unaided each time following it? Hell yes!

Many people with CIDP have regular IVIG on a long term basis. I say many, it’s so rare there really aren’t that many of us to begin with (with between 1 to 4 people in a million newly diagnosed each year) but of the few of us that exist, a large proportion rely on IVIG.

The bad news is that there is an international shortage of immunoglobulins, and not only that but it’s expensive. And I mean, really really expensive.

How much would you pay for your life? What’s it worth to you to be able to get yourself out of bed in the morning and put on some clothes? To what value do you hold being able to walk, drive, go to work? What price would you put on being able to pick up your own children for a cuddle if they wanted one?

What if the number was more than you could ever hope to afford? What if your only chance was if an organisation such as the NHS agreed your life was worth it?

So far I have had 370g of immunoglobulins, at a cost of £19,980.

That’s just the cost of the medication itself, not the cost of the IV giving sets, the pump, the trained nurses, an obs machine, an overnight stay in hospital, 3 meals a day etc…just the immunoglobulins. Just the thing I need to walk, to move, to carry on leading an arguably ‘normal’ everyday existence.

If I were to have a maintenance dose of IVIG once a month it would cost the NHS £4,320 a month.

How many of you think I’m worth it now?!

It’s one of the NHS’s biggest expenditures. So (understandably I think) there are strict criteria to fill if you’re going to be approved to have it as a long term therapy. The main criteria being obviously a diagnosis of CIDP (or one of the other approved conditions) but also that you have tried other (read: cheaper) treatment options first, namely corticosteroids.

There has been some recent evidence that suggests ‘pulsed’ (which is really just a fancy way of saying ‘intermittent’) steroids, if taken over 6-8 months, can cause a period of remission in patients with CIDP. For anyone who doesn’t really know what that means, it would mean that for a certain length of time (maybe months, or even years) I would neither have any symptoms of CIDP nor require any treatment for it. Which would, as I’m sure you can imagine, be fucking awesome.

So it was for that reason that I spent the last few days of December drugged up to my eyeballs on a hefty dose (40mg per day) of Dexamethasone, one such steroid. I had to take 20 tablets per day between Christmas day and the 28th December. Fortunately they didn’t kick in immediately, but when they did, boy did they!

I basically spent 5 days in a Dex-induced fog, in which I found it hard to concentrate on anything, kept dozing off during the day but couldn’t sleep at night, felt very ‘spaced’ and ‘out of it’, felt starving but also nauseous. I had awful acid reflux and indigestion (despite also being started on a PPI called Omeprazole, which is a medication designed to reduce the amount of acid in your stomach and thereby prevent or minimise acid reflux). My fingers and toes swelled and felt like hot, numb sausages on the ends of my hands and feet, my face rounded and became flushed, I had headaches and pressure behind my eyes and my vision was altered, my legs felt like they were made of wood, and every single motherfucking muscle in my entire body ached like I had been beaten within an inch of my life, especially my neck and shoulders. On the whole, it was one of the least pleasant experiences of my life and not one I care to repeat, certainly not at monthly intervals.

I had hoped, that having given the steroids a go, I would be considered for funding for long term IVIG, but on seeing my consultant the day before yesterday, I learnt that in order for that to happen, more hoops must be jumped through and the next hoop is Prednisolone. Another member of the delightful steroid family (I just can’t wait to find out how strong the family resemblance is- NOT!) I will be taking 40mg but this time every single day (rather than for 4 days out of the month then a break) for the next 8 weeks.

If I deteriorate twice within that time, needing further IVIG alongside the prednisolone then my consultant is satisfied that proves I am a steroid non-responder, meaning my chances of being granted approval for regular IVIG are good. If however the prednisolone works, and actually improves my CIDP and keeps me walking around like a regular person, well then I’ll be on it forever and ever, for the rest of my life.

Sure, over the years it will turn my skin to tissue paper that breaks and weeps when so much as a cashmere fucking jumper brushes against it, and sure my head will look like a beachball on top of my body which will look like a PLANET, and sure it will cause my bones to crumble and break when I so much as stand up but HEY, at least there’s a treatment…right?!…

You may have guessed I’m unenthused by the outlook of the rest of my life on steroids. Over time I would be weaned down from 40mg, to a dose that still worked but minimised side effects (possibly as low as 5 or 10mg daily) but I still don’t relish the idea of being on something so potent for the rest of my life long days. I am intending (or at least fucking hoping!) to be around for quite some time yet, and I’m only 29 for Pete’s sake.

The fact is, all my despair at the idea of another 40 years on steroids may turn out to be for nought anyway, as if the prednisolone doesn’t work, well then I will be facing the rest of my life on IVIG instead. So far I’ve had no nasty side effects from IVIG, barring one hell of a headache when my infusion rate was increased (I’ve learned the trick to counter this is to drink your entire body weight in water, seriously, just keep asking nurses, support workers, students, or anyone who walks by your bed, to fill that water jug up!) That doesn’t mean I won’t ever get any nasty effects from IVIG though. Everyone responds differently, and although they try to keep you on the same product, from the same manufacturer (I always have Privigen), you can respond differently each time.

Some people are able to increase the length of time between treatments over the years, stretching themselves from a 5 weekly cycle, to perhaps a 6…7…or 8. Other people start out needing it every 5 weeks and then wake up one month and find they’ve deteriorated at 4 weeks since last infusion…or 3, and for some people it stops working altogether and they need to try something new (There are a couple of other treatment options that are less common that I haven’t mentioned here because, frankly, I don’t know much about them and am unlikely to need them anytime soon since I’m such a HUGE IVIG success story).

Right now, just 9 days since my last dose of IVIG, I am feeling good. I can walk around, get up and down stairs, shower and dress myself and all that jazz. I can be left alone to take care of my children, and we can get out, to the shops and the park. Hell I can even drive (although that is always the first thing to go, when I do decline, as the idea of being behind the wheel and losing control of my limbs, is, I’m sure you’ll agree, shit scary).

The hard bit is knowing it won’t last. That I have about 2 more weeks of this before I start to become fatigued. Then after a week of being functioning but exhausted begins the slow decline…the pins and needles return, usually in my hands, then the twitching begins, where my nerves are misfiring electrical signals causing muscles in my feet/legs/arms/torso/face to pulse and/or visibly twitch.

From a mobility point of view, first up the stairs will become an obstacle, getting up them will feel akin to scaling Everest every time I need a wee, then getting down them safely will become an issue. I will start to struggle when I try to get up from kneeling, or squatting, and need either a hefty piece of furniture, or a sturdy person to pull me up.

Within days I will be walking like a pirate with wooden legs, not bending them at the knees at all (or I’d fall!) and eventually Chris will persuade me I should be using my crutch, and out it will come from it’s hiding place behind the coat rack in the hall. Within a couple of days again I won’t be able to lift either of the children, or anything heavy or cumbersome at all. It only takes a few more days for me to become ‘unsafe’ to be left in charge of my own children, as I won’t be able to necessarily get from sit to stand so can end up literally stuck on the sofa. And since I can’t walk or drive at that point, if anything were to happen, I wouldn’t even be able to get them to a Dr, or hospital, or whatever they might need. So then Chris has to be off work to effectively ‘take care’ of all 3 of us.

So you see how, slowly but surely it manages to take over. And of course at some point along the way, someone, my consultant, or my GP, decides enough is enough and I am readmitted to hospital, and after just 60g of IVIG I am usually off my crutch and mobilising safely, and certainly by the time I’ve had the full 110g I am pretty much back to baseline and feel like I’m ready to take on the world again.

And then it’s just a case of rinse and repeat.

A lot of people have expressed horror at the idea of being reliant on immunoglobulins for the rest of my days, and to be honest- it aint my idea of sunshine and lollipops either.

If I were approved for regular IVIG long term though, those last couple of weeks, where my body stops working and life falls apart a little, would cease to exist. Instead, just prior to my decline I’d go to Salford where I’d receive 80g of Privigen as an outpatient (i.e. sit hooked up to an IV for a day, come home and go to bed then go back and do it again the next day) and that would be me done for the month. So no it isn’t ideal, but neither is the current situation of being admitted to hospital every 6 weeks or so, and neither are the steroids with all their nasty side effects, and neither is the entire situation or the diagnosis or any of it.

Ideal is not an option anymore. The only option is coping, surviving…carrying on. So that’s what I’m trying to do.

Several lovely people keep checking in with me to see how I am. I think they mean “How I am feeling” as opposed to say, “How I am still alive after everything that has happened these past couple of months“, although frankly that feels like a relevant question too.

The answer is “Ok”. And also, “I don’t know”.

I’m able to attend to most of my daily needs- showering, toileting, getting dressed, eating and drinking, entirely independently. I can walk without help and without falling down. I can even manage the stairs with my trusty crutch. I left the house for the first time yesterday and that was totally fine. So really, when I think about it, I’m doing ok.

Certainly compared to this time 2 weeks ago, when a bruised and defeated version of myself lay in a bed on AMU hooked up to the magical 2nd dose of immunoglobulins that seemed to kick start my recovery. In fact some days when people ask me how I am, I feel like resorting to hyperbole and images flash through my mind of me cartwheeling around the room shouting “Spectacular!” and “Superb!” because physically, although I’m probably only about 85% back to normal, compared to how bad I was I feel about a million times better.

On the other hand, when people ask me how I am, I feel stumped. A simple question leads to a spiral of confusion. At any given point in time I find it almost impossible to identify a singular emotion that would cover my current state of being.

I feel genuine happiness at being home and reunited with Chris and my boys. I feel so much gratitude and huge crashing great waves of relief at how well my recovery is going. I feel stressed about our impending house move, and frustrated at the timing and how inconvenient it is and how little help I can be on a practical level. Although there is also a tinge of excitement mixed in there, of fresh starts and new beginnings. I feel worried about family and friends, who have their own struggles and who’s battles, unlike my own are not yet definitely won. I feel terrified that this may yet turn out to be only an interlude in my own battle and that my symptoms might come back or I might wake up one day to find I can’t move again. I feel sad about the loss of our baby, about the plans we made that now won’t be and the space in our future that now waits to be filled, or not. And occasionally I feel overwhelmingly and irrationally angry. I’m talking pure unapologetic rage. Towards people, towards things, towards life itself. It comes out of nowhere and in a flash it’s gone again, leaving me wondering if a side effect of IVIG therapy is some kind of Banner-esque transformation.

The fatigue aspect of recovering from Guillan-Barre has been spectacular. Always inclined towards narcolepsy, in the sense that I have an ability to fall asleep any time any place (a distinct advantage when it comes to juggling shift work and motherhood) I now find myself like a cat. Delighted to be alive and yet unable to fully appreciate what life has to offer because I need to spend about 16 hours of every 24 asleep. Waking up is a several hours long process compared to getting to sleep which doesn’t even require my eyes to be closed before the process begins.

Today I didn’t get out of bed until 10am. I spent most of the afternoon sat on the sofa in my pyjamas wrapping ornaments and picture frames in bubble wrap and placing them in a box because it was the most “helpful and yet restful” thing I could think to do. Even so by teatime I was unreasonably exhausted and I fell asleep whilst putting Toby to bed, before even he himself went to sleep and woke up an hour or so later, summoning up just enough energy to transfer myself into my own bed before zonking out again.

Admittedly I’m awake now but that’s only because Chris came to check where the hell I had got to and his presence in the room woke me up (and scared the shit out of me) so I decided to sit and drink some ribena and potter a little on my phone before falling asleep at a slightly more reasonable hour for someone (well) over the age of eight.

When I think of how I used to spend entire days from 6am until 7.30pm in sole charge of the kids and then go work a busy night shift before getting back home at 8am and then sometimes sleeping for a couple of hours or maybe not at all before continuing where I left off with shopping and cooking and cleaning and playing etc. It’s hard for me to comprehend how I was even still alive.

These days all I can manage is some light packing and/or childcare duties (after about 12 hours sleep) and I’m done for. It’s like getting used to a whole new pace of life. Pace being the operative word and something I think I am going to struggle with because I like everything doing yesterday and find it difficult to differentiate between urgent and non urgent tasks. Chris calls it “impulse control issues” as it often leads to me undertaking ridiculous tasks at the most inopportune times because I can’t bear to just let it go for another minute. I know I am going to have to learn though if I want to keep the momentum going with my recovery without setting myself back. It’s just going to be hard.

So, if you ask me “How I am” and it takes me a few minutes to formulate a reply. Or indeed if my reply is a garbled nonsensical string of words, then you’ll understand why.